Table 1 The JASP-1 program included seven patient- and family-centered clinical visits

1

Visit week 0

One hour with MD and RN and 45 min with the RN

Child Parent(s) MD RN

The MD and RN met the child and the parent(s) together. According to the patient- and family-centered care approach, the RN communicated with the child and parent(s) after the joint visit. The aim was to answer questions, get to know the family, and ensure they have understood the information and diagnosis. The family received a direct telephone number to the RN.

2

Team visit week 2–4

One hour with each profession, i.e., 3 h

Child Parent(s) RN PT OT

Introduction to the team. The RN communicated with the families about the diagnosis, answered their questions, and made sure they understood the information they had been given and the treatment plan. The PT made a careful joint assessment and talked about physical activity, and the OT assessed hand functionality and daily life activities. Support was offered according to child and parent needs; for example, regarding their feelings after diagnosis, and how and when to contact the PRC.

3

Visit or phone week

3–8

30 min

Child Parent(s) RN

According to child and parent preferences, the visit was held at the clinic or by phone. The RN explored how the family was doing and answered their questions. Support was offered according to the child’s and parents´ needs; for example, regarding worries about the future after a JIA diagnosis.

4

Visit week

12

45 min

Child Parent(s) MD RN

The MD and RN assessed together how the child was doing, the potential effect of medication, and explored how the family was coping. Support was offered according to the child’s and parents’ needs; for example, regarding how to handle subcutaneous injections at home.

5

Visit or phone week 14–18

30 min

Child Parent(s) RN

According to child and parent preferences, the visit was held either at the clinic or by phone. The RN explored how the family was doing and how medication administration worked as well as effects and eventual side-effects. The RN also answered the children’s and parents’ questions. Support was offered according to child and parent needs; for example, about side effects of medication.

6

Visit week 26

45 min

Child Parent(s) MD RN

The MD and RN assessed together how the child was doing, the potential effect of medication, and explored how the family was coping. Support was offered according to child and parent needs; for example, conversation about coping strategies.

7

Visit week 52

45 min

Child Parent(s) MD RN

The MD and RN assessed together how the child was doing, the potential effect of medication, and explored how the family was coping. Support was offered according to child and parent needs; for example, a conversation about the child’s medication.